Archive for the ‘chemotherapy’ Category

So this is what I have been working on lately….actually, photographer Bill Jordan has been doing all the work. Tell me what you think.

Who's this cute girl and where did she go? This was taken before my surgery (bilateral mastectomy and partial reconstruction) in May 2009. I still had all my original parts, including eyebrows and all that curly hair! At this moment in time, I honestly can't imagine I'm ever going to look like this again.

The last hair picture.

Shortly after my first chemotherapy treatment in the middle of June ’09 I decided to get a shortshort haircut so that when I lost my hair it wouldn’t be such a shock. This was harder for me to take than I thought it would be. I couldn’t get used to this look at all. Didn’t matter much though, the $50. haircut only lasted a few days before it fell apart. Literally.

When my shortshort hair began falling out in bunches I couldn’t stand it anymore and got my head shaved. coolPaula’s daughter, Mattie “buzzed” my head in their backyard, giving me a mohawk first before completing the job. I felt giddy, funny, crazy, and goofy and had about as much fun as humanly possible as losing your hair to chemotherapy can be.

This is pretty much how I spent most of my summer vacation. That notebook went everywhere with me, it’s where every appointment and important bit of information is recorded. Yea, I know, it’s not a pretty picture, an even less pretty memory. On this particular day I received the disappointing news that yes, I should consider radiation. I wasn’t really ready for that at all.

This was one of the good days in August, when I tried on several "Cranial Prosthetics" at Renee's Survival Shop. This is the "Karen" wig....isn't it amazing how hair changes your appearance? I had a blast going through a dozen different "looks", but in the end did not buy one. I have a few borrowed wigs, but only wear them when Charlie asks me to. Must be hard to be eight and have a mom with a shaved head who runs around hatless....

All photos were taken by William Jordan. He’s been a busy guy this summer, as he has followed me to nearly every doctors appointment, while also running his business, preparing for a unique Art Gallery Opening and Show, completing other photography jobs, plus running his urban farm (real crops and chickens, too!) If you would like to see more of his work go to: http://www.williamjordanphotography.com/

Yes, I know I haven’t posted in awhile and thank you for calling to see if I am OK, but it is just that the fatigue of four chemo’s is real. When Dr. Schott said the effects of chemotherapy is culmulative, she wasn’t kidding. Actually, she (and NP, Joan) were so right on all their predictions, that I will just believe them completely from now on.

This fourth round of chemo hasn’t been as horrible as round three was, but still, itchy hands and feet, no hair, searing hot flashes, fatigue, and bone pain. Good news on the bone pain though, if you eat ibuprophen like candy, it is actually bearable. I took Joan’s recommendations this time and have been downing multiple Motrins at very regular intervals, whether I have pain or not, and it is working pretty good. No collapsing because of intense and sudden pain this time around. Countin’ my blessings however small they may be!!

The hot flashy thing is a trip though. Last night (for kicks) I recorded each time I was wakened when I voilently threw off the covers and dove for my water bottle. My bedside post-it note pad has the following times recorded;

11:00pm, 12:24am, 1:53, 3:30, 4:19, 5:46,

and then a little break…7:30am

Then, all day, I only had two, maybe three hot flashes. Whats’ up with that? Why does the body save the fireworks for the overnight hours? So they can be seen against the night sky? Is this some kind of sick entertainment for extraterrestials we are not aware of??? (I have chemo-brain…….I’m allowed to go off on whacky tangents.) If the body seeks balance, this does not seem to be the way to do it.

As if that is not enough…

I am still trying to process all that was said during the last U of M visit as well, namely the option of participating in the “Phase III Trial of Bisphosphonates as Adjuvant Therapy for Primary Breast Cancer” Clinical Trial. I am trying to find non-fatigued time to do some independant research on this, but the basics are: Bisphosphonates seem to strengthen the bone, and in previous studies of women who did not have chemotherapy, they provided a 30% better chance of NO relapse of breast cancer (in the bones, a common place for relapse of BC apparently). Sounds good, right? But, not so fast….. there is this whole world called “risks/benefits” analysis……of course bisphosphonates as a drug/adjuvant therapy have risks, as well, and one of the risks is osteonecrosis of the mandible, and to a lesser extent the maxilla. (I think this means death of the jawbone.) Of course, this occurs in a small percentage of the people who take this drug, but enough that my dentist wants to talk to me about it before I sign up….so back to the tooth man next week (again). Part of me really wants to go for this one, because a recurrance of cancer in the bones just sounds so….much worse. Can’t really just cut ’em off like we did with the breasts. And if my jaw bone goes south, well that’s bad I suppose, but not as bad as dying from bone cancer, right? I really hate these life and death decisions….I’d like to go back to deciding what kind of wine to have with dinner.

Just being able to have wine again will seem like a gift. As soon as that mettally-mouth thing goes away, I’ll have another small blessing to count.

Tomorrow I get to meet the Radiation Oncologist, Dr. Rubin, for the first time. I have heard wonderful things about him. I sooo hope I like him and his recommendations. I’ll let you know here first.

Yuk. Once again. Fingers ache, vertebrae seem stunned, feet and hands itch, horrible metal mouth, searing heartburn, all complements of chemotherapy. In addition, just as my Oncologist predicted back in June, I have a new side effect: hot flashes….except they are not timed to infusions, I think they are here to stay. Apparently when you are my age, chemotherapy throws you into menopause whether your body is ready or not. I guess I am thankful that I can at least semi-function for an hour or so at a time….but I really have to think about what it is I intend to do. I sure do hope this is the last time I ever have to endure chemo, but of course, you know I think about all those stories I have heard…..from the survivors themselves, of relapses, and more treatments.

Can’t write anymore right now. Each time I begin a new paragraph I sound too pathetic.

Well, I made it to the infusion room, and got incredibly lucky to get the private room again! The premeds went in with no problem, and Taxotere was next, again NO PROBLEMS! It is now 6:45 pm and the Cytoxin is about halfway done, and I’ll be soon leaving Infusion Center B1 for the last time. I love U of M, the nurses are all exceptionally skilled, today Julie is my infusion nurse, and she is great. As much affection as I have for the people here, I really hope to never, ever have to come back here again. I am grateful for the people who make the treatment of this disease their lifes’ work, but cancer still sucks.

Well, today is Thursday, day 7 after chemo, and I am learning new things. Like how to work through discomfort. I have a new appreciation for people with chronic diseases who just learn to live with less than optimal conditions. Thankfully, I’ll only have another month of chemo-crap to process through my body. I’m doing so much better than last weekend, I actually walked for 20 minutes this morning, although when I came home and sat down, I got to experience the weirdest aching in my bigger bones, like they were saying “Oh nooooooo, you either have to keep moving or don’t do anything at all!! If you rest, we’re going to come up and bite you BIG…that’s what you get for trying to function again…he he he he……” Only one more month one more month one more month………………..

Yesterday I met Dr. M, a Medical Oncologist in Toledo for another opinion on radiation for me. (BTW, I liked her.) Oh, how I had hoped she would make my decision easier!! Nah……that didn’t happen. She, like other docs, was careful to detail the facts of the cancer, explain options, describe the traditional treatment plans, and the plans some oncologists are favoring. She, without actually saying it, seemed to suggest that she would not recommend radiation for me, but asked me if I was a “gambler”. Adding radiation to my treatment plan is a safe thing to do, even though it only adds a very small percentage of survival to my outlook. I could “gamble” and not do radiation and I might be in the group of women like (97, 98 out of 100) who do not have a local recurrence (meaning in the chest wall or breast area) of cancer…..OR I could be unlucky and be one of the 2 or 3 women who does have the recurrence. I told her that I don’t consider myself be be so lucky anymore. That’s a sobering thought.

So now I am still on the fence. My roller-coaster is going up the incline, albeit ever so slowly. Every six hours or so I don’t have a definitive answer, I feel like I’m adding another mile onto the incline of this crazy masochistic trip. At this moment, I am leaning on the side of just suckin’ it up, and taking the radiation. I really want to live cancer free for the rest of my life if possible, and right now if that means trading 5 weeks of the hassle of radiation for 2% better chance of no recurrence….well, then that’s what it means. And no whining, too. So many people have it so much harder than I do and I really am grateful for all the goodness that cancer has brought into my life.

wow. This time around the chemo game the reality has changed. For the first two infusions, it took five to seven days for the poison to really cause any discomfort and significantly affect my day to day living. Not so for chemo #3….only took 48 hours to make me feel awful. I am amazed, awed and dismayed.

It is really amazing, how powerful the drugs are. I don’t hate them, I even appreciate what they are doing. I know that they are killing the DNA of dividing cells, even the good ones. I want the chemo to do it’s job, even if it makes me feel bad. I’ve even had a little anxiety about maybe four treatments isn’t enough and asked Dr. Schott if she should add a couple more infusions on to my plan. She said no. I would do it, I swear I would. This whole experience has been such a pain in the ass I don’t ever want to do it again.

I can’t believe how tired I am. For the first two infusions yea, I felt tired….but I laid down, rested, maybe even for hours, but then I got up and felt OK to do something. I dunno, but this time around it feels different and I am worried. I feel tired and achy from the core of my body. It seems like my spine is taking the hit this time around. I feel the throbbing in my cervical vertebrae and in my scapula especially this morning.

I feel so bad for my kids….what a bummer I am for them to live with this summer. They have had way too much TV and video games, and I feel bad about that.

I am especially bummed out that I don’t think I’ll make it to see the Unitarians today. They are a source of goodness and happiness that I will sorely miss this week.

I have completed three out of four chemotherapies sessions!!! Only one more to go in three weeks!

My nurses at Uof M are incredible. I love JOAN, Nurse Practitioner to Dr. Schottt, and I LOVE TERRI, who is always smiling and happy and treats you like you are her first and only customer of the day, and I LOVE the guy at the pharmacy, and my Chemo nurses always do such a good job of caring for me, even though I know they are SO BUSY!!!

My chemo today went off without any bad reactions this time…….but they really threw all the meds in they could think of first before the taxotere, which is behind the “badjuju” . Only then, it made me way more tired.

Bad news is they cancelled my 10:30 am appointment with Geeta, the PT. Big disappointment. Could have left at 11:00 or so instead of 8:15 am……

No one gave me any compelling advice one way or another on the Radiation issue. I guess I really am on my own with this.

Also, my being gone so much is affecting my family poorly, too. That make me sad. I’m trying hard to kep up with everything AND have time for myself to focus, study, and meditate, but I guess it is not working out too well. :^( Any ideas?

Tomorrow I’ll tell you what Dr. Schott had to say about radiation, and the visit to Renee’s Survivor Shop.

So after five days, I am finally able to listen to the tape of my visit to Dr. H, Radiation Guy at U of M. It doesn’t really help much.

I had pretty much over the weekend decided to stop whining so much and just suck it up and at least take a positive attitude about the whole radiation thing. But listening to the tape of the consultation, well….you tell me what you think….here are a couple direct quotes:

“”you fall into a grey zone regarding the rules of radiation after a mastectomy” and “there is a lot of discussion in the literature amongst the experts of what is the right thing to do in this setting, because there are some downsides to doing the radiation” . Neither one exactly inspires me to jump up on the table and get into position.

On the other hand….I just want to be the best patient I can be, be informed, proactive and do everything in my power to rid my body of these despicable cancer cells. I just keep thinking about seeing Louie and Charlie graduate from High School, and then if they choose, college, too. What can I do to ensure that I get to see those things? Is it choosing radiation as part of my treatment plan??

Lou and I have been reading so much about this. Looking for original studies, information prepared for the layperson, and talking to people who have been through it, and dammit there really is no clear cut answer.

Over the weekend I was surprised to see on BREASTCANCER.ORG : Radiation may be recommended if four or more lymph nodes are involved OR for premenopausal women, at least one lymph node was involved. hmmnnnn this is the first time I have seen the “premenopausal” clause…..I guess this is because if you still produce estrogen, it provides food for the cancer cells (if your cancer is estrogen receptor positive, that us.)

Wednesday

Had three good visits today. First, I had a “Healing Touch” appointment with Veronica at The Victory Center. As usual, it was insightful, calming, relaxing. She is great, and reminded me (again) to come from a place of unconditional love, and to (again) live in the moment. To ask the universe the question and wait for the answer. I already know all of these things, but at this juncture, I need someone to remind me of them. I really need a Veronica in my life about every other day or so right now.

Saw Dr. Barone, my Plastic Surgeon for my last expansion on my right side (150 cc’s). To all of you outside of Ohio….wow, too bad you can’t see this big girl. She’s a beaut in a round-expansion implant-kind of way. I’m thinking I gotta be careful about bumping into things until I get used to my new perameters! Only thing is, I really got to step up buying a boob for the left side, because I am lopsided in a really dramatic way now. God, I hope they don’t have to special order them. I hope the boob store just has them “in stock”. Guess that should go on the “to do” list this week right after I figure out how best to keep living. But on the serious side, Dr. B provided the time for a serious talk about cancer options, specifically radiation. I really appreciate this doc for his time and willingness to talk, and look me in the eye when he answers my questions. Plus, he has the best nurses ever. And, he has the nicest office staff, too. Thanks Suzi for taking additional time with me today. It meant a lot to have that additional conversation. You are the greatest!

Last good visit was with BFF Tahree. We just talked, drank wine, visited a neighbors’ garden and then out to dinner. What a good pre-chemo evening, to talk to other “girls”.

Thursday (tomorrow…or by the time this posts, today)

Get records for second opinion. See Geeta, U of M Physical Therapist Extraordinaire. Blood work. Appointment with Joan, NP and Dr. Schott, Oncologist. And if I’m lucky and blood work is good, chemo at 3:30. Send good energy my way…..I’ll be in Ann Arbor..

OK, so now I am getting a serious case of anxiety about a visit tomorrow with a new doc for me…Dr. Hayman, Radiation Oncologist. I have been sending him vibes of “no radiation for Kay-Lynne” but I don’t know how strong my super-powers are this week. And, to top it off, I think I have not researched everything I should have in preparation for this visit. Because, of course, I don’t know where to begin.

All I know is, if I have to do radiation, it will complicate the already messy business of breast reconstruction. I just want to be done with the chemo (only 2 more treatments to go!) move on to the endocrine therapy (more commonly known as hormone therapy) and try to claim my life back.

I know it has only been 6 months since this roller-coaster ride began, I shouldn’t be whining about it. I’m doing pretty good and I should just be thankful. And I am. Just want to skip being irradiated.

If you have any helpful hints for me…..questions to ask the new doc, please don’t hold back.

Well, two days ago I felt awful physically, and got bad news (?) from my Optometrist. I consciously decided to not be upset about the eye news until I know more after Tuesday. There. Done with that. As for the bone pain, it, too, is slowly taking leave of my limbs. Yesterday and today I have been more active, choosing to push through the pain, and have been mostly successful in ignoring it, at least until I slow down. Then, I kind of pay for it, but it is nothing that three Motrin’s won’t modify.

The reason I decided to ignore the bad stuff yesterday was because coolPaula had arranged for an interesting whirling dervish of a woman named Gaya to come to her home and cook some lovely Indian food, talk about life, mandalla’s and energy forces, and teach a brief meditation exercise.

Here is what I learned:

Not only do Indian women talk really fast, they cook really fast. I was paying very close attention and taking notes, while I was helping to prepare four complete and beautiful Indian dishes, yet I couldn’t repeat any of the dishes, except maybe the rice noodles on my own.

There are different kinds of cumin, and the cumin we usually cook with won’t work in this type of cooking…..Gaya called it: “gigantic cumin, it ruins everything!”

In India, food is used as a healer…..Fresh Food gives Fresh Thinking.

My notes say: “Celestial wholeness…..Mandalla is wholeness within yourself.” It was profound at the time, that’s all I can say.

I’m not sure how much I gained as far as knowledge of Indian foods, or understanding of the “inquiry method of meditation”. But this I do know. There is nothing more fun than getting together and preparing food together, especially when you have a “director” of sorts. Preparing and sharing food together is good medicine, for me anyways. I resolve to, when I am “more better”, invite friends over more often for dinner, AND have the preparation of the foods be a part of the entertainment.

Chinese Dragonboat Festival

So early this morning, the weather was awful, and I wasn’t sure we were going to make it to the Dragonboat Festival, but at exactly 10:15 it stopped raining, and I managed to get the boys up and out the door by 10:45 to go to the Dragonboat Festival down at International Park. Amazingly, there was no resistance, no whining, no “Idon’wanna”s” from either kids, and we arrived just in time for one of the Dragonboat races. Both boys seemd to think it was cool, and so did I.

The weather really cleared up, it was breezy, but just the right kind of breeze, enough to kick the stink off of Toledo and make it…actually kind of cool. We arrived in time to see Kathy and Linda in the Tai Chi demonstration, and the boys got to pick up “kid stuff” and buy pop and play games and win prizes. So there was something in it for everyone…..two hours of a different kind of experience. By the time we were ready to walk out, the chemopain started to creep up, and I was so happy to get home and hit the bed.

I’m glad to have friends that are so interesting and are into really different and cool things like Indian cooking and Tai Chi. I love the diversity, and it is all fitting into a good place with me at this time. Thank you!